In September 2013, nearly 500 people gathered in Rio de Janeiro, Brazil for the 2013 World Congress on Huntington’s Disease. It was the first large global conference focused on the research and care of HD to be held in Latin America, drawing people from 41 nations.

International HD experts presented the latest scientific and medical advances, and regional specialists described research projects and efforts to improve HD care across the continent. In addition to the scientific and medical updates, the conference included patient and family perspectives on living with HD in Latin America and around the world.

A first for Latin America

The first plenary session brought home how significant it is for Latin America to host a world HD conference. Rodrigo Osório, president of the Agrupación Chilena de Huntington in Chile, said that as many as 120,000 Latin Americans are affected by HD in some way, but top-notch care can be hard to find. In some countries, genetic testing is not widely available, and misdiagnosis is more common than it should be.

Enroll-HD, the first global HD study to include participants across Latin America, was the subject of a special plenary session. The study will eventually involve as many as 3,000 people in sites in Argentina, Brazil, Chile, Peru, Venezuela and possibly other nations.

Each day, two sets of talks were held at the same time; one session was aimed primarily at scientists and medical professionals, and the other was for families, patients, and other people affected by HD. Speakers included academic scientists, neurologists and other medical professionals, as well as people from HD support organizations and those personally affected by the disease.

Italian HD expert Elena Cattaneo, PhD, who was recently appointed a permanent member of Italy’s senate, talked about her research exploring what the huntingtin protein is and how it works. Several talks described the new drugs that could start being tested in people as early as 2014. Others focused on improving access to genetic counseling, an Australian project to protect people against genetic discrimination, and ways to improve life with HD. CHDI neurobiologist Ignacio Munoz-Sañjuan, PhD, introduced FactorH, an independent effort to help Latin Americans with HD gain access to housing, basic social services and medical care.

Why partnerships matter

Nearly 100 family members attended the conference, and several talks discussed ways of coping with the physical and emotional demands of the disease. British television journalist and war correspondent Charles Sabine, who found out he was gene positive in 2005, described his own experience. He pointed out that effective treatments for HD will probably emerge gradually over time —meaning that long-term collaborative partnerships between researchers and patients are going to be crucial.

The congress was a landmark in Latin America, says neurologist Monica Haddad, MD of the Universidade São Paulo, one of the conference organizers. It inspired the shared sense that the best way to improve the lives of people with HD is for professionals and people affected by the disease to work together in this collaborative spirit.